Reality Check

Perhaps I was due for a reality check. All the running, yoga and weight training I’ve been doing, not to mention regular life chasing around two young kids, had lulled me into the false belief that I am now just a normal person. Good as new. My blood work has been so perfect lately that the doctor said you would never know that I had a transplant. So it wasn’t until my fourth day of vomiting that it even occurred to me to call the BMT clinic.

I left the nurse a message that went something like this: “I’m not sure if I still need to call you about these things, but I’m just letting you know that I’ve had a really bad gastro infection for the last few days.”

She called me back, saying: “Yes, you still need to call us about these things!”

Oh. OK. A normal person I am not.

In fact, they were so concerned about my weight loss and inability to eat that they brought me into the hospital clinic, warning me that I might be admitted if my condition did not improve. Admitted? Were they serious? Who gets hospitalized from a run-of-the-mill gastrointestinal infection?

People with compromised immune systems, that’s who. People like me.

“If your electrolytes aren’t good tomorrow, we’re admitting you,” the nurse told me on the phone. So I had exactly twenty-four hours to whip my depleted electrolytes into shape. I stopped at the store to buy some Gatorade, only to realize that orange juice is a way better source of potassium, and without the artificial colours and processed sugars. So I spent an entire afternoon and evening consuming quantities of orange juice, potatoes and bananas only suitable for an elite marathon runner before the Olympics. It wasn’t until the next morning that a friend pointed out to me that I could have just bought potassium pills. Oh. Well, darn. A week of not eating certainly diminished my thinking capacity.

Thankfully, by the time I saw the doctor my condition had improved and they did not admit me. But the whole episode was an unwelcome reminder that I am not as normal as I’d like to think. It’s pretty safe to say that all of my friends and family have been treating me like a regular person, which is how I like it (I’d rather not be treated like a sick person). And besides, how else do you treat someone who regularly runs fifteen kilometres at a time? I clearly don't need help carrying the groceries. But the truth is, I am only nine months out from my transplant. And I am acutely, painfully aware that only half of all stem cell/bone marrow transplant recipients survive five years past their transplant. Only then will doctors use the word "cured." I’ve got a long way to go.

So I may seem good as new, but I’m really not. My entire immune system died and was replaced by someone else’s. Besides being traumatized by near death and all the invasive tests and treatments, I now have to live with permanent side effects. When I asked my doctor if I needed iron supplements to bring my hemoglobin up, she smiled at me and said: “Those are someone else’s red blood cells trying to live in your body. Nothing but time can bring them up.” I will always be more susceptible to disease and fatigue. I have chronic insomnia. I cannot focus. I am more prone to cavities and bone loss. (In fact, my dentist just told me today that I should use prescription toothpaste. Who knew such a thing even existed?) My ovaries will never work again and, as a result, I have to be on hormone replacement therapy for the rest of my life. This, along with all the chemo and radiation, puts me at greater risk for secondary cancers. In short, I am damaged goods.

But you can’t feel like that on a regular basis because if you do, your body will start to believe it. And if your body believes that it’s damaged, it might just give up on you. There's a Chinese proverb that says: he who imagines bad things happening, experiences them twice. We can't foresee the future, so there is no reason to expect the worst. Now I don't mean I'm going to start spouting Pollyanna platitudes. And I'm still scared of a relapse. But studies show that patients with the most positive expectations have the best health outcomes. So I have to believe that I will heal, that I will make it, that these setbacks are temporary and that one day I will feel like myself again.

Of course, right after I recovered from the gastro nightmare, I woke up with a vicious head cold. On some days I certainly feel more damaged than others. And on those days I make friends with the clerk at our wine store.

Bottoms up.

Move On

I’ve been really sick this week with a terrible gastro bug, and I’m a little embarrassed to admit it, but in my boredom between bouts of vomiting, I became totally hooked on the Biggest Loser. (No need to mock me for this, my husband has already done enough of that for everyone.) Now those who know me should know that I don’t tend to watch reality TV. They also know that I am not (nor ever have been) overweight. In fact, with all the puking I’ve been doing this week, I’ve got the opposite problem – I lost most of the weight I worked so hard to gain in the last six months. So the appeal in the show is obviously not that it’s inspiring me to lose weight. I recognize that it’s a little strange for a skinny person to relate to the struggles of the overweight. But the appeal is watching how hard these people are working to change their lives for the better. They fall off treadmills and get back up, they twist ankles, break bones, throw up. And they get back up. It brought to mind all the shuffles I’ve done, the Bodypump sessions, yoga classes, and all the long runs in -24 to get my body back to health.

Blood, sweat, and tears, baby. 

These inspiring contestants often lose the equivalent of entire people (one man lost nearly the exact weight that I am now – imagine, me, hanging off your back as you go about your life. It’s crazy). They are hoping to never go back. And this got me thinking about what I never want to go back to.

First off, being sick this week has been a horrible reminder of how sick I was during chemo. I cannot wait to recover from this and get back into the gym, into the yoga studio, and onto the roads and trails. There is nothing like being sick for a year to appreciate everything that a healthy body can do for you. I feel like I just can’t get enough movement, enough deep breaths, or enough sweat to make up for all those days in a hospital bed. I’ve signed up for a half-marathon this fall and for trail races this summer. I will not be held back by the hell of 2012.

Second, as I watched the contestants say goodbye to their unhealthy, overweight selves, I thought about my old pre-cancer self. Who do I want to get back, and who do I want to leave behind?

Obviously I want my health back. I never want to be a sick person again. I never want to be in a hospital again. And I want my brain back. All the treatments, side effects, and time off from thinking have turned me into intellectual sludge. I frequently have no idea what’s going on in the world, I don’t remember things, and I struggle to focus on anything for more than thirty minutes at a time. So I would like those parts of me back.

But I don’t need the high-strung, overachiever, over-stressed part of me back. She can stay back there.

I sense that keeping her there will be as much as a struggle for me as it is for the show’s contestants to leave their overweight selves behind. She is a deeply ingrained, slightly dysfunctional and definitely neurotic, part of me and she wants me to be better, to do Big Things, to be successful. She pushes me to work too hard, and to strive for things that are Important but don’t make me happy.

I suspect that everyone has a version of him or herself that they want to leave behind. Whether or not you’ve survived a life-threatening illness, we all have a part of us we don’t want hanging around anymore. That girl who was stuck in a dead-end job. That guy who couldn’t escape an abusive boss. That child who could never stand up to the bully. That mom who could never lose the weight.

And I say if you've had a second chance, if you've shaken that person off, then never go back. Keep that door shut. Lock that person out. Put that cupcake down. We have to remember what makes us happy and keep out the demons trying to destroy that.

So move on, baby. Move on.

Into the Quiet

One year ago, my life exploded. It wasn’t just falling apart, it was in a million pieces. All of my carefully made plans disintegrated. All of my hope for the future fell onto the floor. And I was thrown into chaos. Doctor’s appointments, medications, therapy, lung tests, heart tests, x-rays, CT scans, bone density tests, chemo, radiation… the list is endless. It was a whirlwind of treatment and the most extreme of emotions. And while I had lots of rest, I never felt rested. My mind was never quiet. What did I regret? What did I treasure? Would I die? Would I be chronically ill or disabled? And if I didn’t die, what would I do next?

With the one year anniversary of my diagnosis now passed, I have a pressing, urgent need to get quiet. Something was lost during my cancer battle, an innocent, optimistic, invincible part of me that I would like to get back. But another part was also lost, the busy part of me, the driven part, the part that wanted success at all costs. And I don’t miss her.

So I’m going into the quiet.

Part of the reason that I wanted to do my yoga teacher training was to have something to strive for. I flounder when I don’t have a goal, but I wanted a goal that was gentle, achievable and, yes, quiet. I have a tendency towards overachieving, and I know that diving back into my PhD at this stage of healing would almost surely kill me. Now that I’ve survived this year of diagnosis and treatment, a year that left very little room for self-reflection, I want a year of true healing. This might mean different things to different people. For me, it means yoga, running, nutrition, family, friends, and God. And not much else.

But there is a problem with being quiet. I’m loud. I am an unapologetic extrovert. I eat too fast. I like running hard. I love being busy and I love to talk. Being quiet is not in my nature. My mom used to say: “We’re right here, Rachel, you don’t need to shout.” Now I say the same thing to my son.

And yet, in these days after cancer, all I want is to be quiet. Truly against type, I would love to go to one of those spiritual retreats where you don’t speak for an entire weekend. It must be my donor’s immune system taking over – maybe he is an introvert.

But in my search for quiet, I discovered that I’m terrible at meditating. Really terrible. I sit down and try to meditate and my mind jumps around like a chattering monkey, latching onto any thought and bouncing it around my head like a pinball. I may not be speaking, but I am certainly not quiet. This is where yoga comes in. With the right teacher, I don’t think during a yoga class. I breathe, I adjust my body, I work through the flow, and my head clears. It is a moving meditation, and I get into the quiet spaces that have eluded me since the doctors said the word leukemia.

So doing the yoga teacher training wasn’t really a career decision – I don’t know what I’ll do once I’m done. I still haven’t ruled out the PhD. Rather, the yoga training was a spiritual decision. A decision made to support my healing, my quest for quiet, and my longing for true rest after a year of total hell.

Who knows? Maybe after all of this zen I’ll turn out to be a quiet person after all.

But I doubt it.

Making Sense (Or Not)

Tomorrow will be exactly one year since I was diagnosed with AML. Happy Anniversary to me. It has been a year of extremes. Extreme pain, extreme exhaustion, extreme perseverance, extreme relief. Moving forward, I hope, it shall be a year of extreme happiness.

So far my happiness project is not going exactly as I had planned. It turns out that chronic insomnia is a severe impediment to feeling happy. Let’s just say it’s difficult to be cheerful with your children at 6:30am when you’ve been up since 4:30am, especially when you can’t drink coffee.

So how do you choose to be happy anyway, when every fibre of your being is limp with exhaustion?

I'm trying to keep my eye on the prize. The first month of my happiness project went fairly well – I exercised more and drank green smoothies and tried to be tidier. February was also a qualified success. I had more dates with my husband, played laser tag with friends, did more yoga, and actually went on a child-free snowboarding weekend with the love of my life. We definitely had more fun. (Though, admittedly, having more fun than we did last year is not all that hard to do.) Throughout all of this, however, I was utterly exhausted.

And now it is March. My goal for this month was to focus on my career. I have some major decisions to make, decisions that are difficult to do with a muddled brain that hasn’t really slept since 2008. How smart could I be, I wonder, if I got the sleep that I really need?

But I can’t get that sleep and I can’t think rationally. After months of making myself crazy trying to make a logical decision, I gave up. I made a decision purely from the heart. I decided to enrol myself in yoga teacher training. I have no idea what I’ll do when I’m finished – my brain can’t think very far into the future right now. But it just felt like the right thing to do. It felt like something that could heal me. And for the last seven years I’ve been making decisions with my head while stifling what my heart wanted. I’ve been doing what “made sense” even if it didn’t make me happy.

I am acutely aware that I could land back in the hospital at any time. Any plans that I make, any decisions that I land on, could blow up right in my face. Why agonize over the planning? It’s all so tenuous anyway. So from now on, I’ve decided that I will no longer make sense. All decisions, all the time, from the heart.

Let the crazy begin.